He has been a bit wobbly last week after a couple of heavy falls. Spent all yesterday in bed. I persuaded him to come down for evening and then back to bed and sleeping by 10.30. I was woken by noises at 3.00 and found him downstairs , wearing shoes and overcoat [ always needs assistance normally ]. He said "I've made tea and I'm off to work ". He's 81 and hasn't gone to work for 8 years.
I asked where he was going and he said " Bow Lane ". He hasn't gone to Bow Lane for 30 years ! I said "Its 3.00. Go back to bed" He went off obediently and straight back to sleep. Fully clothed. As for me I couldn't get back to sleep, of course . . . Tea and crossword and tired today.
When he dreams its usually about early years when his business [ printing] was new and they were all young and keen. I guess he remembers the energy he had. Sad.
I have no energy today !!!! Jean
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Sometimes my husband Roy says things like 'I think I might start going to work again''
And I ask him what he would do( he gave up his business and so hasn't worked for about 3 or 4 years). He says that he might start a new business, if I would only let him learn to drive again....................
Dad was sitting , as usual, in his chair the other day. He will answer very slowly if he is asked a question, but very rarely speaks otherwise. He suddenly from nowhere came out with 'I'm thinking I should be at school shouldn't I?' He's 77! A lighter moment in this horrible world of PSP!
Jean, My heart goes out to you!! Women who deal with PSP are my heroes. Sounds like you are very close to having him stay totally on the ground floor. Hopefully you have a suitable bath on the main floor (shower). If not you need to take action and plan ahead now. Stay strong, you CAN do this!! Jimbo
Thank you. I will stay strong but its sometimes more difficult - especially when I feel tired or when my back feels sore. I have planned ahead and have spent our pension pot on making the utility room into a wet room, ensuite with a garden room where we have just got a riser chair. Its very pleasant. As long as he can manage the stairs I think its good exercise for him. Realising that he went downstairs on his own in the dark is worrying.
Strangely he has been much better today. You never know where you are, do you ? He seems to have vivid dreams but is alright when awake. Jean
There is a pad that you can put by the bed and which will warn you when he is getting out of bed (sounds alarm when stepped on). This might prevent him from getting up without your knowledge and trying the stairs. Jimbo
Jill, I'm doing ok. I still haven't removed all of Sharyn's things from her closet and won't until I feel "ready" to do it. I've met a woman after dating just two and she is now the love of my life. Who would have thought that at my age I could fall in love again. It's been nine months since my beloved Sharyn left for heaven. Time goes by so fast at our ages. I still have moments when alone at home and I think of Sharyn and the tears come. I miss her so very, very much!! Thanks for keeping in touch. I hope you are doing as best you can. Stay strong my dear friend. I will be coming to the UK in late June for two weeks. One week in the High Wickham area and another in the Malmesbury area. Will also visit a relative in Birmingham. Bringing my Grand Son with me.
my husband would get like that after taking certain medications, once stopped he would b normal . We'll sort of normal whatever that is these days lol.
he would occasionally say he could see people or vans , all sorts of things would last as long as threes days , then stop .recently he has seen more . dat in his chair with curtains drawn he saw my neighbour had workmen on the roof . Snow . Hears rain . when I tell him it's not real he understand s. I have looked up Charles Bonnet syndrome . Where ever he sits in the room , when I speak he will look the opposite way . his memory is still v good he will remind me things .
Thank you. I don't think its medication so much as vivid dreams. I can remember when I was a child not being really sure whether some things had happened in a dream or reality. He can't explain it. He just acts on impulse, which I understand is typical of P.S.P. Its a real puzzle trying to understand how they see the world, isn't it ? In the end I feel confused too ! Jean
My husband sometimes looks the wrong way when he goes to say something to me,as though I am on that side and also sometimes he looks for me in all directions. And then says....when I have been sitting to one side of him all evening......"oh there you are.I wondered where you were"
Thanks for your replies. I sometimes wonder where I am myself ! It must be such a confusing world for them. Chris clings to me like a life raft sometimes. He also sometimes says I stop him driving or gardening as if I'm a jailer !! Then he does things behind my back. So I feel like a jailer !!
try not to beat yourself up , It must be very frightening for them . gosh , there hav been the odd time when I have into M&s through a different door and felt disorientated , that's frighteneing enough . I know what you mean when you say he clings to you .
when he first started we were away for the weekend with friends on a coach trip and he had gone into a shop on his own which he normally did and I carroed on with the others until someone said you had better go back John is looking for you and not happy !
when o got back he told he he had suddenly got frightened m didn't k ow where he was and wasn't there Very unlike him . the he started to wake a t night and ask me to hold him tight.
we have learned such a lot haven't we travelling the Parkinsons road .
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A very pleasant surprise
A terrifying 48 hours...
Time off Work
Falling out of bed
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